Are you being charged for end-of-life care?

Are you being charged for end-of-life care?

Thousands of elderly people are wrongly charged for end-of-life care

Sally-Ann Marciano

Sally-Ann Marciano

Accessing end-of-life care can be a battle for many families, and of course this usually comes at a time of great emotional turmoil and sadness.

Sally-Ann Marciano describes the ordeal she and her mother went through to get her father assessed for NHS funding and to get proper care in place when he was dying. She’s not alone in finding that the ‘system’ let her down – very badly – and her story will resonate with many.

What she and her family went through is appalling, and it’s inexcusable that proper end-of-life care is still so difficult to access. Sally-Ann is also not alone in experiencing what now often seems routine on the part of the health and social care authorities in telling someone their care needs are just ‘social’ care needs (means tested), when anyone with an ounce of sense and knowledge can see they are health needs that should be funded by the NHS.

As in Sally-Ann’s case, many families are also told they ‘won’t get funding’ before an assessment has even taken place, and many assessors do not even know the person being assessed, or have any meaningful understanding of their health needs. Families are also often excluded from assessments, even though they should be involved right at the heart of the process.

Sally-Ann comments:

“It is so wrong. Our parents have contributed so much to society, and they deserve a dignified end to their life. As I tell many people, you have no second chance with end-of-life care. It has to be right first time, every time.”

You can read Sally-Ann’s moving story here



  1. Diane 2 months ago

    There are so many abuses of this system. My mother died a few weeks ago following a series of strokes. Before discharge last December we asked for her to be assessed for Continuing Healthcare (CHC) as she was clearly extremely ill following a brain stem CVA. Around this time we discovered that her care costs were covered by the local authority as she had been subject to a Section 3 a couple of years ago. It was clear at the start of our meeting that the CHC assessor and the Mental Health rep. had met beforehand and decided who was going to pick up the tab as it were. The local authority lost and we went through an assessment which was a joke. Her needs were described as only moderate in almost every category and there was no way to appeal against the descriptions. My mother was completely incapacitated. Doubly incontinent, unable to move unaided and unable to speak or swallow and barely able to communicate in any way. She was nevertheless discharged to a nursing home. The staff there were kind but the level of care did not seem enough for what she needed. Following a period of no visiting due to D&V I noted that my mother had deteriorated even further and raised this with staff as I felt she had had another stroke. No action was taken and she died in her sleep a few days later. The staff seemed surprised by this. The time from discharge to death was only 6 weeks. I don’t feel that she had sufficient care as she neared the end and I think that this was entirely due to financial reasons. I still find it hard to speak of this but I wonder how many others go through this experience. Death of a loved one is never easy but should it be made so difficult due to penny pinching by the NHS when the system spends so much on bureaucracy?

  2. Mel 3 months ago

    My mum was awarded nursing care funding rather than Continuing Healthcare (CHC) last August, could you let me know whose responsibility it is to review the funding. My mum deteriorated quite rapidly from Jan and passed away in March but no one seemed to prompt a review of funding and I could not get any response from adult social care to query a review. Thanks

  3. Elaine 5 months ago

    I wrote with an update a few weeks ago about our plight with my mums application for Continuing Healthcare (CHC). My mum with late stage Alzheimer’s was originally assessed in April 2016. She was refused CHC funding in September. We appealed in early December but have not received an acknowledgement ( although we tracked our letter to ensure receipt). The Local Authority (LA) conducted an informal meeting on 21/12:16 and stated that my mums nutrition has declined. They requested that the nursing home do a more detailed report over a four week period and then they would decide whether a further Decision Support Tool (DST) was required.
    Unfortunately my Mums health deteriorated further over that period and she passed away on 24/1/17. The home didn’t apply for the Fast Track process as they were completing a detailed daily report of my mums health and care.
    We have spoken with our MP and in support she has stated that she will write to the CCG if the appeal is not successful.
    We have no intention to give up on fighting for an overturning of the original decision in April to deny our mum CHC.
    Is there anything else we should be doing whilst we wait for the CCG to communicate with regards to the appeal?

  4. Mary 9 months ago

    My mother recently scored high in 3 domains (cognition,mobility and medication) and moderate in 3 domains (nutrition, continence and skin) in a recent assessment for NHS Continuing Care but was found to be ineligible , her needs deemed to be social rather than health. I understand that a clear recommendation of eligibility would be expected where there are a number of domains with high and or moderate needs and I am wondering if there is any indication anywhere of what that number might be.
    (I am currently appealing ,on behalf of my mother as I believe the ratings have not been applied correctly for behaviour, mood, nutrition, breathing, and ASC )

  5. Elspethblack 2 years ago

    Ok, I’m back again! This time I need to check what is supposed to happen when someone is discharged from hospital. Our mother is in late stage vascular dementia with no communication, very little mobility and other illnesses. She was taken to our new emergency hospital last week because had pneumonia caused by aspiration. Patients should stay in the emergency hospital for 72 hours and are then transferred to the hospital designated for our area. When family visited on Saturday evening, we were told that mam would be transferred as soon as a bed became available, however at around six o clock on Sunday evening she arrived back at her nursing home in an ambulance. She still had the needle attachment for the drip in her hand. I would have expected some kind of care plan/advice from the SALT team and thought she should have had a CHC assessment carried out. It felt as though they had just thrown her out of hospital. Any advice please?

  6. Elspethblack 2 years ago

    My view on this is that if the law states that people who are ill have to pay for their care, then they have to pay for it. However the law does not state this. How are the people carrying out these assessments getting away with this? This and only one other site on the Internet are the only ones clarifying the laws – even the sites relating to illnesses most of the people whose level of illness are described on this site skirt around the legal rights. It seems to me that there is some kind of fear or curtailing of freedom of speech surrounding Continuing Health Care. What is going on! My mother has recently been refused chc (in spite of MP involvement). We have raised issues regarding her care – sitting on pressure sore without protection seven days a week/stuck between bed and safety rails due to failure of nursing home staff checks/ nursing home confused about SALT recommendations ignored. The list goes on, but who actually listens to your concerns – what about those poor souls who don’t have anyone to check that they are ok. No one seems to give a monkeys.

    • Author
      Angela Sherman 2 years ago

      You’re right – for people with no family to fight for them, the situation is very bleak indeed.

  7. Chris-G 2 years ago

    The discharge to assess process that was used in Aug 2014 to get my FiL out of hospital meant that he never got a checklist let alone a CHC assessment.

    That was the case when he had been sent home from from a ward within 3 hours of his arrival because he had refused treatment….. He had a brain injury dementia. A UTI and MRSA infection in a failed leg amputation. Add the morphine and I ask you; would anyone be in a fit state to make decisions?

    His thigh bone protruded like an overcooked leg of lamb and his GP stated that the hospital had sent him home to die of sepsis because he had refused care.

    That being the case….. Where the hell was his fast track assessment?

    They sent him home to die at his own expense within an expensive nursing home.

    Still they argue that they did nothing wrong.

    • Angela 2 years ago

      Just awful, Chris.

  8. alison 3 years ago

    My mum is elderly and is in the end stages of cancer. She had received fastrack funding for the past 7 weeks (since being discharged from hospital). She is adamant she wants to stay in her own home. Had a call from Continuing Care this pm to say current carer leaving on Mon and agency do not think they have a replacement. They will try to get another carer but as it’s Xmas they think it unlikely. What are we supposed to do? Why are they allowed to do this to us? What will happen to mum? How can we find a 24hr carer a week before Christmas if they cant? At my wits end….

    • Angela 2 years ago

      I’ve heard many accounts of people being left without care over holiday periods. It’s massively stressful for families, not to mention the impact it has on the person needing care and the potential for their health to deteriorate or for them to suffer accident and injury.

  9. stephen 3 years ago

    our relative will not eat drink or take meds, he is now on end of life register he was sectioned for 2 weeks back at care home 2 weeks ,the care home admits it cannot meets his needs. sends him to hospital the hospital send him back to care home ,they have taken his savings pension home and dignity ,the N H S clearly do not want a bed taken up .A lifetime of serving his country ,only for this disgrace called social care,my sympathies to all the families enduring the care system

  10. David C 4 years ago

    My Mother-in-law lives with us in Surrey. She will be 89 this month & has had vascular dementia for over 25 years. She has lived with us for 8 years but last year she was declared to be at end of life and granted NHS continuing care. we had had carers coming in to assist my wife for over a year at that point of time and wished to continue with them. This was not possible and receive assistance from the NHS as the carers they wanted us to use were not acceptable to us as we had had previous experience of them and we are not allowed to chose carers who are not approved by them. They are not approved because our carer company have not requested it as the NHS do not pay enough. So although the NHS company would always have 2 carers to deal with Mum and we only use 1 carer at a time to help my wife, this does not compute and so we have had to turn it down because we are not allowed to top up the cost either. the proposed new scheme of providing an individual health budget is the same, you are not allowed to top up to enable one to use your own choice of carer, in Surrey this will not happen until April 2014 at the very earliest as they were not part of the pilot scheme.

  11. Angela 4 years ago

    Thanks for your comment Sheila. There seems to be little national publicity in the mainstream press about goes on for families who are fighting for end-of-life care and battling for funding. It comes to the fore from time to time, but people really only take notice when, as you say, it happens to their own family.

  12. Angela 4 years ago

    Yes, you’re right. And the language assessors use in the assessment notes seems designed to play down needs and obscure the real issues. Here’s a previous article on a similar theme:

  13. E J Foxall 4 years ago

    I have just recently had an award after three assessments, The guidelines have not been followed, The english wording has been given different meaning, The panel that decide have not met my wife, No funding would be given until I had to let my wife go into a nursing home, No recompense has yet arrived, We have both contributed for over 50 years, Those who have never worked contributed nothing and live off the state get everything free, The whole system is degrading, unfare, and not fit for purpose and designed not to provide financial help until you have spent your life savings

  14. Angela 4 years ago

    I couldn’t agree with you more Gary. The division between so-called ‘social’ care needs and health needs is one that the NHS regularly seems to exploit to suit its own ends and protect its own budgets. Elderly people have supported the NHS for the longest and, when then need it to support them, they find themselves faced with a convoluted system of assessments that determine whether they are ‘eligible’ for NHS care.

  15. Gary Bagnall 4 years ago

    We have just completed the assessment process and it was decided that my Mother didn’t qualify for NHS funding. It’s difficult to keep an open mind when dealing with the welfare of a parent, that said it really beggars belief when you discover what the NHS describe as “Social needs”.

    Every single resident that we see in my Mothers care home are completely and utterly incapable of taking care of themselves each requiring 24 hour care and supervision but not one of these residents qualify for NHS funding.

    Those supervising the assessment admit privately that the assessment is woefully inadequate and specifically designed to minimise funding. Statements are made to family members at the early stage of an assessment like “You are wasting your time” “In 8 years I have never seen a single applicant qualify” etc All designed to dissuade you from even attempting to proceed.

    These elderly people still recollect the old NHS slogan “Care from Cradle to Grave” and wonder what went so badly wrong and why the NHS once such a caring organisation now wears a mercenary mask and is bereft of compassion for a generation who served their country so well.

    • Sheila Liddell 4 years ago

      I would like to comment on the above very sad but typical problem. The only way things can be changed in my opinion is constant and relentlless publicity.

      Many people may be unaware of the stituation their own families could, under present circumstances, have the same unthinkable problems.
      It will most likely take enormous pressure to force a change especially when the NHS seems to have no interest currently in the terminably ill.
      I would be interested in knowing what has been tried already and if others agree with my view.

      Kind regards
      Sheila Liddell

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